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Thank you for the response CHFather. By the way, I'm sorry your daughter has to deal with this monster. It must be incredibly tough for you to witness an innocent child being tortured, but obviously, you're doing what you can to learn and get armed with knowledge. I wish you the best. I'm not at all new to the monster, but I'm very new to researching and even talking about it, so any comments, like your reality check to me, are really appreciated. Been anxious about the "what-ifs" lately.....and it's spiralling me down. Your comments have eased my mind a bit.....and really, it's made me just now sit back and realize what a wonderful world this really is. A complete stranger halfway across the world, just answered my fear-based question, and I feel better. That's pretty freakin wild. Thank you again.

Hey Jseivers, Celtic Cluster and BoscoPiko, Here is another chart from the oxygen demand valve method of aborting CH study I ran in 2008 that may help explain why the frequency of your CH goes up after repeated aborts with oxygen therapy. This chart illustrates weekly CH frequency, mean weekly time to abort and mean weekly pain level at start of therapy over the 8 weeks of this study for one of the six chronic participants. The other six participants had similar charts, just not at dramatic in weekly CH frequency range. As you can see, the weekly CH frequency increased from 12 CH/week at start of this study, up to a maximum of 38 CH/week at the four week mark then dropped to 8 CH/week by the end of week 8. This chart helps confirm the frequency of our CH increases with continued use of oxygen therapy up to a point then decreases over time. At the same time, the mean weekly time to abort drops from 8 minutes at the start of this 8 week study down to 4 minutes by week 8. The mean weekly pain level at start of this 8 week study also dropped from Kip-7 down to Kip-4 by week 8. Why this happens is very interesting. It involves what is called vascular toning. Essentially what is happening over repeated aborts with oxygen therapy and hyperventilation is the muscles lining the arteries, capillaries and microvasculature within the trigeminovascular complex tone up (strengthen) like doing curls with a dumbbell strengthens the bicep muscles. This means these vascular muscles become more efficient in effecting the vasoconstriction (narrowing of the lumen) that mechanically helps abort a CH. Of course all this is nice to know, but only a foot note in your headache log if you start the anti-inflammatory regimen with vitamin D3 and the cofactors to control your CH. 82% of CHers respond to this treatment protocol within the first 30 days with a significant reduction in CH frequency from 3 CH/day down to a mean of 3 CH/week. Moreover, 54% of CHers starting this treatment protocol experience a complete cessation of CH in the first 30 days. Over the last six months, these efficacy figures have actually started improving. This is due in large part to the use of the sublingual Micro D3 nanoemulsion taken during the initial loading schedule. The existing loading schedule called for 600,000 IU of vitamin D3 taken at 50,000 IU/day over 12 days. It resulted in a mean increase in serum 25(OH)D3 of 60 ng/mL on top of the baseline (starting) 25(OH)D3 serum concentration. The new loading schedule calls for 700,000 IU of vitamin D3 taken at 140,000 IU/day over 5 days. It results in a mean increase in 25(OH)D3 of 70 ng/mL on top of the baseline (starting) 25(OH)D3 serum concentration. This new loading dose is made up of two (2) Bio-Tech D3-50 capsules/day (100,000 IU/day) and 0.5 mL/day of the Nutrasal Micro D3 nanoemulsion taken sublingual under the tongue, (40,000 IU/day) for a combined loading dose of 140,000 IU/day. Both the Bio-Tech D3-50 and Nutrasal Micro D3 shown below are available at amazon.com As this is a more aggressive loading schedule, labs for 25(OH)D3, calcium and PTH are now required two weeks after start of this loading schedule. These labs are essential to ensure serum calcium remains within its normal reference range. The rationale for this new loading schedule is illustrated in the following normal distribution curves for 25(OH)D3 lab results at baseline and after 30 days on this treatment protocol. This new loading schedule will shift the green normal distribution curve to the right so that the mean 25(OH)D3 is close to 90 ng/mL after five to six days. This also results in a faster favorable and CH pain free response. Of course there are speed bumps on the way to a CH pain free response. The most common speed bump is an immune system response to allergens that release large quantities of histamine. As histamine to a CHer is like Kryptonite to Superman, this is where a first-generation antihistamine like Benadryl (Diphenhydramine HCL) comes into play. It blocks the histamine H1 receptors and this helps prevent the neurogenic infrlammation associated with allergic reactions. As BoscoPiko pointed out, some CHeers have a reaction to Benadryl. Fortunately, there's Quercetin. It's a plant and fruit based flavenoid that acts as a good antihistamine, but larger doses are needed to get the same response as Benadryl. Hope this helps. Take care and please keep us posted. V/R, Batch

I have just found this excellent website, where solutions to chronic conditions are crowd sourced. I suffered a debilitating 2 week episode last year but owe my recovery to the resources on this website that led me to explore treating my CH with MM. I feel indebted to help others in the same situation! Please consider sharing your experience on there so that others can find solutions too. https://www.stuffthatworks.health/cluster-headache Thank you.

Yeah, my CH are episodic too. While I cannot imagine having to deal with the threat of one of these monsters on a daily basis as chronic patients do the blindside nature of the episodic form is no picnic. My tanks are the E size and I do recall my physician informing me insurance now covers this so I may need to find a way to add supplies to my 'durable medical equipment cave'. I just ordered the mask from Clusterheadaches.com so this will help. I have most of the supplements listed above in the house but I'm also a celiac patient so I'll need to order the others from appropriate providers if necessary. Both the Bio Tech and LiveWise state they are gluten free. I suspect certification may not be needed. I'm glad I registered today...this was overdue.

The key word there is "some," and the key issue is causality. Just as is the case with verapamil, more than a few people who have been here have speculated that triptans messed up their cycles or caused them to become chronic. My daughter who has CH has never used verapamil and didn't use a triptan for the first seven years she had CH. In fact, she had no meds, not even oxygen, during that time. Rode out her attacks. Her cycles nonetheless became more frequent, less predictable, and worse (though she isn't chronic). I'm not saying that anybody is wrong about causality issues, because nobody knows, but I am saying that tens of thousands of people with CH use triptans and take verap, and they ain't all turning chronic. Whether triptans and/or verap are messing with their cycles, I don't know, but as I said above, for many people things change no matter what they do or don't do. And lots of people stop verap after their cycles without reporting significant effects. Some people take extended release verap and think it's great, others (most others, I think) find that the ER doesn't work very well for them but the immediate release does. As intelligent humans, we're always looking for causality. Is the weather making a cycle worse or bringing one on? Stress? Eating the wrong things? Taking some other med? Probably yes for some of those things for some people and no for others. CH is a crazy monster, and all people are different. If you get your D levels up, verap is likely to become irrelevant to you -- if you're like most people.

Hey Jseivers, An oxygen flow rate of 10 liters/minute is too low to abort a cluster headache effectively and reliably. To be effective and reliable, the oxygen flow rate must be sufficient to support hyperventilation. Trying to do this with a nasal cannula is not only impossible but stupid. Your neurologist and the oxygen equipment providers should have known this. The Rx for your home oxygen therapy should have been written for an oxygen flow rate of 15 to 25 liters/minute with a non-rebreathing oxygen mask as an abortive for cluster headache. I held a patent for a method of therapy with an oxygen demand valve as a CH abortive. It's now expired. That patent application was based on a thesis I developed along with results from a pilot study I ran with 7 CHers (one episodic and six chronic). These 8 CHers used the method of therapy I developed for the oxygen demand valve to collect data on a total 366 aborts logging abort times and pain levels at start of therapy for eight weeks each. The mean abort time for CH pain levels 3 through 9 on the 10-Point Headache Pain Scale using this method of procedure for the oxygen demand valve was seven (7) minutes flat. 364 of these 366 aborts met the goal of an abort in 20 minutes or less for a 99.4% Success Rate. Data from that pilot study is illustrated in the following chart. As you'll see in this chart, the demand valve oxygen therapy (DEVO) resulted in CH aborts three to four times faster than oxygen therapy aborts with an oxygen flow rate of 15 liters/minute with a non-rebreathing oxygen mask. In 2010 I modified this method of procedure to work with any oxygen regulator using what I call the Redneck Oxygen Reservoir Bag System that's made from a new clean kitchen trash bag, a plastic bottle with cap and the bottom cut off, tubing from a disposable oxygen mask or cannula, some electrician's tape and Duck Tape. The DIY instuctions and photos to make a Redneck Reservoir Bag follow. Push the plastic bottle through the 1 inch opening cut off the corner of the closed end of the kitchen trash bag and tape the bottle neck with electricians tape for a gas tight seal. Place additional electricians tape around the middle of the bottle. This becomes your hand hold. You can add the oxygen tubing from your cannula to the 0.5 mm opening on other closed corner of the kitchen trash bag and add electricians tape for a gas tight seal. When you've done this fold and tape the open end of the trash bag with Duck Tape. Make sure the bottle cap is on tight then fill the Redneck Oxygen Reservoir system ahead of time (before your next CH) by connecting the oxygen tubing to the barb fitting on your oxygen regulator then turn off the oxygen supply when bag is filled with oxygen making it snug but not tight. The bag should hold oxygen for at least 12 hours. If used with the following method of therapy, there should be sufficient oxygen in the Redneck Oxygen Reservoir Bag for three CH aborts. The Method of Procedure. At the first sign of an approaching CH or as soon as you wake up with one: 1. Stand with mouth open and jaw dropped like saying the word "Haw" and hyperventilate at forced vital capacity tidal volumes for 30 seconds. Standing gives your diaphragm full range of motion to hyperventilate more effectively. 2 Exhale forcibly and when if feels like your lungs are empty of breath (they're not), do an abdominal crunch and hold the squeeze until your exhaled breath makes a wheezing sound for one second, then without delay, inhale a lungful of room air and repeat this breathing procedure 10 times as fast and deeply as possible (roughly 30 seconds). On the last forced exhalation, hold the abdominal crunch/squeeze until your exhaled breath. Doing this will squeeze our another half to full liter of exhaled breath highest in CO2 content. Then unscrew the bottle cap from the Redneck Oxygen Reservoir Bag and inhale a lungful of 100% oxgyen and hold it for 30 seconds. Remember to replace the bottle cap. 3. Keep repeating this entire sequence until the CH pain is gone. Most CHers will take 7 to 8 complete sequences (7 to 8 minutes) to abort their CH. If you're hyperventilating with room air properly, you'll start sensing a very slight tingling/prickling sensation across your lips, hands, ankles and feet. This is called paresthesia and it's caused by vasoconstriction of the capillaries in the skin. You may even feel a slight cooling sensation across your lower back as the vasoconstriction squeezes blood away from the skin allowing it to cool. Effective hyperventilation like this blows off CO2 from the lungs and bloodstream faster than our bodies generate it through normal metabolism. Lowering the CO2 content of the blood elevates arterial pH making the blood stream more alkaline. The elevated pH enables blood hemoglobin to have a greater affinity for oxygen so it uploads more oxygen than normal and this sends super-oxygenated blood to the brain. The elevated arterial pH also triggers vasoconstriction throughout the body and in particular, the trigeminovascular complex. This counters the vasodilation that occurs during a CH hit so acts as an abortive. The super-oxygenated blood flow to the trigeminal ganglia also causes the neuropeptides (CGRP, SP, VIP and PACAP) that are released in neurons and glia within the trigeminal ganglia during the CH pain phase to break down more rapidly and this acts as a CH abortive. None of this can happen if you don't hyperventilate. Build your DIY Redneck Reservoir Bag and practice this procedure before your next CH. Your real problem is you're likely vitamin D3 deficient and that deficiency is contributing to the frequency, severity and duration of your CH. I'll send you a PM with more information. Take care and please keep us posted. V/R, Batch